The Risks of Relying on Direct-to-Consumer Genetic Testing Service Agreements to Protect Genetic Information

A consumer’s unique genetic code is their most intimate piece of personal data. Many federal laws concerning the privacy and nondiscrimination of health data are outdated, and most are related to healthcare providers instead of commercial services. To ensure that direct-to-consumer (“DTC”) genetic testing companies do not misuse a consumer’s unique genetic code, consumers rely on contractual agreements to protect their genetic information. DTC contractual protections are insufficient for several reasons: (1) consumers may not understand or read the agreement, (2) the company can modify the privacy statement, (3) the company could breach the agreement, and (4) new DTC companies may not include the same level of protection. Ultimately, the concern is that the DTC company may use the consumer’s genetic information to be detrimental to the consumer or in a way the consumer did not intend when they provided that information. To address this, Congress should enact a comprehensive federal law for the protection of genetic information